Virtual-Doug

The Mom Report

I have been wondering more and more lately – does Mom really know who I am, or does she just, at some basic emotional level, know I am someone important to her.

A few days ago, she was sitting in the lobby of her nursing home.  As I approached the glass door, we spied each other, and she waved her hands and flashed a big smile. 

While I signed in, the Director of Nursing (DoN) approached Mom and began to ask her the kinds of questions I can’t ask.  The DoN gave me a quick glance, and I knew she was doing the questioning for my benefit.  In short, she asked Mom who I was – if I was related to her – but the DoN did it in a non-threatening way that would not cause Mom to lose face.

Mom could not tell the DoN who I was.

Now, I can’t say that surprised me – I have suspected for some time that she cognitively did not know who I am, though she very much recognizes me when I walk in to visit her.  Neither has Mom recognized the Mystery Guest Blogger the last two times she has gone for a visit.  However, after Mom and I sat on the couch to begin the usual session of “wrassling”, Mom triumphantly looked at me and very distinctly said “You are my son.”

She was proud of being able to remember.  I was proud for her, but it is painful to have pride in something so child like.

I wish there were more to write about.  I know some of you are more than curious as to what she is like these days, but in all honesty, there is little to write about.  Her world has gotten terribly small, and it continues to shrink.

Physically, she seems to be hanging in there.  While she needs a walker all the time, even to go a few steps, she seems to be doing alright otherwise.  By pure coincidence, I was there recently when her physician came in (he is also my doctor), and we had a nice conversation while he checked her.  She eats well most days (that is an up and down thing, depending on the whims of the disease), and Dr. Vic said her blood pressure was fine.  She may have some trouble with her cataracts returning, but Alzheimer’s may render cataracts a non-issue.

And – life goes on – at least in my world it does.

The Lessons, Redux

Last week, I wrote one of those rare postings that seems to provoke a visceral response.  In writing about the well of feelings that surround me in caring for my mother, I got a number of comments, one of which was from my brother.  It read “Its Something That We Do.”

If you are a country music fan (I’m not), you recognize that as the title of a song.  Though Clint Black sings about he and his wife, the lyrics actually apply to any relationship we describe as “love.”  Some excerpts:

    But it isn't something that we find
    It's something that we do

    An endless and a welcome task
    Love isn't something that we have
    It's something that we do

    We give ourselves, we give our all
    Love isn't someplace that we fall
    It's something that we do

I believe love is an action verb.  It transcends the silly high school girl images of the knight in shining armor and the fair maiden.  Love – whether we are talking love between friends, love between family, or erotic love – all require action on our part.  Love without work is worse than meaningless – it hurts people.

Look in your Bible at the first letter Paul wrote to the church in Corinth.  Read the first part of Chapter 13.

• Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.

Here’s the same passage translated in a different way:

    Love never gives up. 
    Love cares more for others than for self.
    Love doesn't want what it doesn't have.
    Love doesn't strut,
    Doesn't have a swelled head,
    Doesn't force itself on others,
    Isn't always "me first,"
    Doesn't fly off the handle,
    Doesn't keep score of the sins of others,
    Doesn't revel when others grovel,
    Takes pleasure in the flowering of truth,
    Puts up with anything,
    Trusts God always,
    Always looks for the best,
    Never looks back,
    But keeps going to the end.

Hey – I lived it.  I know I was a little shit sometimes, but Mom never stopped loving me.  I did a lot of selfish things, including volunteering to go off to combat when she was a recent widow.  She never told me “Don’t” when I married the wrong girl and never even hinted at being judgmental when I went through the inevitable divorce.  No – Mom believed that loving her son was just something that she did.

I sometimes laugh and tell people there is a little Vietnamese in me after living in Việt Nam for 1 ½ years.  There are no nursing homes there – generations live in the same house.  If I were Vietnamese, my grandkids would be caring for Mom, and doing it at home.  They would be loving Mom simply because it was something that they did.

That’s what my brother and his wife are doing now.  They are visiting – seeing Mom for what she is today.  They laughed with Mom – swapped stilted conversations with Mom – loved Mom.

       Its something that they do.

The Lessons

Yes, I still try to visit Mom every day.  There are more days I don’t visit than I like to admit – but for the most part, I go.

I visit at least for a little while – sometimes 30 minutes, sometimes an hour.

We sit.  We tussle.  We talk.

Well, we kinda talk.  All semblance of a coherent conversation is gone.  I can ask her how her morning went, and the answer  may be “Oh, okay”, or it may be “We don’t do that here” or it may be “Terrible – just terrible.”

“What was terrible, Mom?”

“Oh, these people just don’t know how to do it.”

In other words, there is nothing fulfilling in a conversation with Mom.  There is no feedback – no interaction.  In essence, I just make my mouth move in an effort to say something, but there really isn’t anything to say.

We were going through a long period of silence the other day when something occurred to me.  Our Judeo-Christian ethic teaches us that real love is a love where there are no expectations.  One person gives with no expectation of getting anything in return.

Well, that’s the ideal, anyway.  We seldom do that.  We give Christmas presents to other adults in the hope of getting something kewl from them – heck, we give Christmas presents to kids in the hope that we can buy their love. 

In a romance, one person will tell the other that they love them unconditionally.  But watch carefully – if in time, the person no longer makes the lover happy, the relationship ends.  We expect our lover to return love, and when that doesn’t happen, we say the relationship is over.  In other words, we expect something in return when we love somebody. We want to be loved too.

I wonder where I will be when Mom is no longer capable of returning love.  Right now, she recognizes me the moment I walk into her room.  She giggles with delight when we tussle.  She returns love.  I dread the time when she is no longer able to communicate with me – when she is no longer able to return love.

She is still teaching me lessons – hard lessons.  I hope I am man enough to learn them.  Can I truly love unconditionally?

An Alzheimer’s Christmas

Last year, Mom lived in her own little house.  She felt independent that way, though we turned off the gas on the stove for her safety.  She could go for her walks every day, eat breakfast by herself, then I would pick her up for the evening meal.  She stayed well fed that way – both physically and socially.

Her memory was still keen enough to remember Christmas past.  She decorated her little house as best she could, which was actually quite nice.  She surrounded herself with warm and comfortable memories.  Nonetheless, she seemed to know deep inside that something wasn’t right – there were so many things she couldn’t do anymore, and so many names no longer came to mind.  But it was a good Christmas last year – a good Christmas.

(As always, if you click on each photo, you will see a full sized version of it.)

This year is different.  Mom now lives in a nursing home.  After falling and breaking her hip in January, she recovered physically, but mentally, it was a downhill year.  Of course, that is the norm with Alzheimer’s patients.  They never get better.  The nursing home is a nice place with a very caring staff. As you would expect in a Christian home, there was a Christmas tree, a crèche and all the other signs of the year.  As Mom and I sat next to the tree in the lobby one day, she leaned over to touch a tree ornament.  There was a connection of some kind as she touched that ornament, but the memories had faded too much.

On Christmas Day, I made my usual visit.  On the advice of a photographer who saw my pictures in an online forum, I told Mom the Christmas story, just as she told me when I was a child.  I wanted her to know there is a God who loves her. She smiled.

Then she opened some presents sent by my siblings, all of whom live out of state.  Though I had to explain who the people were who sent them to her, once I used the words “your children”, she smiled and she knew.  I teased her for tearing the paper – as a kid, I was always lectured to ensure I saved the wrapping paper for later use.  When her gifts lay next to her, she asked me for some paper and a pen.  I found some, gave them to her and wondered what she was going to do.

She laboriously began to write.  Something inside told her she should write thank you notes.  I had to remind her Karen began with a “K”, and she tried valiantly to write more than the scribbles she put on paper.  She, of the school teacher hand writing, could not write a single word.

But we soon went out to the lobby to sit, talk, and laugh together.  As I sang “Rudolph the Red-Nosed Reindeer”, she tried to sing along with me.  She knew some of the words, but the part she loved the most was something I added at the end of the song.   “ . . .you’ll go down in history. Dunh dunh.”

She laughed trying to sing the “dunh dunh” I added, but her frail voice couldn’t go as low as mine.

Laughter made it a good Christmas after all.

The Muse is Silent

The muse has gone silent.

Each week, I write The Mommy Report – an email to close friends and family about my mother and her Alzheimer’s disease.  I usually write it based on some hand-scratched notes I’ve taken when I visit Mom in the nursing home during the week.  But now I’m find my little spiral notepad is empty.  There isn’t much to write about every week.

The muse doesn’t like it when there isn’t something new and stimulating each day.

As her disease progresses, Mom lapses further into confusion.  A few days ago, as I got ready to leave, she grabbed my arm and was very insistent that I take her with me – take her “home.”   That was a first – she had never gotten angry with me before for not taking her “home.”   I took the coward’s way out and found Mary (one of the wonderful nurses) who understood the predicament I was in and told Mom that she was not allowed to leave that day.  Mary baled me out – and smiled as she said “You want your mother to be mad at me, not you.”  I could only grin and realize Mary knew what it was about.

But each day is the same now – Mom and I wrestle for awhile.  She loves to wrestle as it offers physical touch.  She also complains that somebody is supposed to come and take her home, or some minor variation of her need to go home.  We sit on the sofa in the lobby.  On a nice day, we sit outside for awhile.  On Thursday, I took her for a ride in the car, but she got bored and started to swat my leg trying to get me to wrestle with her.

I have no doubt she is deeply confused inside.  I also have no doubt that her cognitive function is not as badly damaged as her ability to express herself in words.  In other words, she knows something but can’t express it.  I can only assume that is very frightening to her.

It sure would frighten me.

In Mom’s mind, time is irrelevant.  In my mind, all the visits are the same.  If you ask why I still go every day, its simply because I know her emotions are still there.  When she says she wants to go home, she doesn’t mean a place – she wants the warmth of family and friends memories.  If I can provide her with a connectedness to her emotions, then I shall continue to go see her.  Its more than filial duty – it is because she deserves whatever gifts I can provide.

As long as she can still smile at me, I’ll go see her.  As long as time exists, she will be my Mom.

We're Off (but not before . . . )

The airplane calls – the one taking us to Việt Nam for two weeks.  After a week’s business in Hanoi, we’ll go see our old friends in Huê.  It’s rainy season right now (Huê has already had three floods this year), so it will be iffy doing any photography.  I don’t know if I will have time to blog while there – I’ll try, but no promises.

My sister has been here this week to spend some time with Mom and to begin the difficult task of cleaning out Mom’s house.  I’m glad she wanted to do it – I would have done the typical bumbling male thing and used a pitch fork.

But, Mom had a treat for her daughter – just to show there is still a spark, Mom walked over to a bed-ridden patient.  (As always, be sure to click on the photo to see the larger version.)

As you can see, the mind may be going, but the soul is strong.

Touch

Its simply one of those things we know to be true.  Infants and toddlers want to be touched.  We call it “bonding”. Its one of the things children need.  They need the tactile sensation of a parent’s touch.  Watch  kids snuggle up to Mom sometime – they want to be touched

Alzheimer’s has been described as childhood in reverse.  The victims are often childlike, but they do not “grow out of stages” as kids do.  Like children, they want to be touched.

I’ve written about my tussling with Mom.  I make time each day to just act like a kid and rough-house a little with her.  It produces gales of laughter.  If I don’t start jabbing or poking or swatting, she will often do it.  As the disease progresses, I have noticed she just wants to be touched.

During most of my visits, we merely hold hands.  In the absence of sparkling conversation, she merely wants to assurance of being touched.  However – there is still a little bit of devilishness in her – this prim hand holding may soon turn into a sharp elbow in my ribs or a swat on my leg.

(Be sure to click on each photo to see a larger version.)

I didn’t pose this photo – as she does on many occasions, she just put her head on my shoulder.  I fussed to get my camera out, but she didn’t mind and kept her head there.  The expression on her face says it all – she is content when she is being touched.

And I know why she needs the reassurance.  There is a gap between what she can say and what goes on in her mind.  She frequently asks – even demands - to “go home”, and though she is no longer capable of defining home or knowing where home is located, she does know that at one time she had friends who visited and a place where everything was comfortable and warm.  I see her like this often – gazing into the distance knowing something is wrong, yet lacking the words to describe her feelings any longer.

So she wants to be touched.

The Home

Its her “house.”  I spend a fairly decent chunk of my time there every day, so I thought I would share a few photos I have been taking at the nursing home where my mother lives.  Many, but not all, of the other residents also have Alzheimer’s (or at least some form of dementia).

Back on the 4th of July, the staff decided to serve watermelon to the residents.  As the activities director carried in each watermelon, she stopped at this gentleman’s wheel chair to get his “approval.”  He was once a successful farmer.  He often comes out to the lobby area to look out the large glass windows and watch the world go by.  The day I took the photo, he saw me aim the camera towards him, and he never changed his expression – not even one little bit.  When I showed him his own image on the LCD of my camera, he never changed his expression.

(As always, be sure to click on each photo to see a larger version.)

I often process the nursing home photos in black and white.  The starkness of B&W suits dementia well – it doesn’t make the disease look good.  But, not everything in the home is stark.  Sometimes I am struck by the warmth and love I see.  In this photo, the wife is the resident.  Her husband comes every single day, and spends hours there with her.  I usually see him pushing her wheelchair as they tour the parking lot.  On this occasion, he “helps” her with her coloring.  A long time ago, this man said “In sickness and in health . . .” and he took that vow very seriously.  Color suites this photograph – it is one of love and caring and sharing.

I’ve watched this lady being fed by the staff on a number of occasions.  She is always in her wheelchair, and though she may talk, I have never heard her.  Sadly, I’ve never seen visitors either.  I wonder who put her in the nursing home – I wonder if she ever had a joyful time in her life.  I wonder what is in store for her.  I wonder if she wonders.

One of the best known stories from the Bible is about Ruth and Naomi.  Ruth was Naomi’s daughter-in-law.  When both women lost their husbands, Ruth pledged to stay with the older woman – “Whither thou goest . . “  And that is how I see the Mystery Guest Blogger and Mom.  My mother may not always be able to remember names and facts anymore, but she knows what love is – and she responds.

This photo definitely should be in color.

Blessings

I’ll call him “Jim”, both because that’s his name and because there are so many Jims in the world that I can protect his privacy even if I post his real name.  Jim is an old college friend.  We were good friends – doing all the good things college buddies do, such as finding places in the next county where we could do our under-aged drinking, double dating, and generally screwing around.  As is usually the case, we drifted apart – I went into the Army and he joined the Coast Guard.  Towards the end of time the Mystery Guest Blogger and I lived in Việt Nam, Jim found me.  After finding this blog, and putting a few other facts together, he emailed me to be sure he had truly found me.

We still haven’t seen each other face-to face since my return from Huê, but we swap many an email and the occasional phone call.  You see, Jim is a blessing.

I have written about my mother’s Alzheimer’s on this blog on numerous occasions.  Jim has been a very real and true help in all this – because he has a lot of experience with dementia.  I mean a lot of experience.  Jim’s mother suffers from dementia, but also Jim’s wife has early onset Alzheimer’s.

Yikes!

Each week, I send out something called “The Mommy Report” to family and friends.  I detail what I’ve observed in my mother during the past week.  Last week, I wrote this:

“For some reason, all his week she has been really pounding me with the same question:  “When am I going to get out of here?”  On one hand, I know there is no reasoning with her, yet I find I cannot resist asking “Where would you go, Mom?”  She only mumbles some variation of “I don’t know – anywhere but here.”  I realize this is her emotions asking the question, not logic.  It is tied in with the statement she often makes that “nobody comes to see me here.”  She means that none of her old friends come to see her.  Something in her inner self still wants to connect to the memories, yet she now lacks the threads in her mind to do that.”

Its one thing to read what experts on the disease say, but it has far more impact when somebody you know who is also going through trials writes about it.  Jim’s reply:

This paragraph is very a very accurate description of people suffering from dementia and I have seen it in my wife and mother.  My wife will sometimes ask me "when am I going to take her home" when she is sitting in her own living room that has been her own living room for twenty years.  I too believe it has more to do with disconnected memories than physical location.  Its sad to watch but a classic symptom.  Gets worse at the end of the day when she is "sundowning" (the actual name of a symptom).  And you are right that it is the emotions asking the question not logic.

At the other end of the friendship spectrum is the wisdom of someone I have just gotten to know.  He’s a regular reader of this silly blog.  Though he lives in the western United States, he is Vietnamese.  We had a chance to meet face to face in April during our trip to Huê.  I’ll call him Sam.

Back on July 1st, as part of a post about my mother, I wrote:

But - - true confessions - - -  I do find myself a bit depressed on occasion . . .
Maybe – just maybe – its because I have seen my own future, and I don’t like it.

Sam wrote back to me:

The last sentence could be as well as mine and billion of others’ confession too, since it’s the utmost truth of our being as a human. For some reason, I’ve felt long time ago, that it’s God’s call for me to console and comfort the living, especially the elderly, to prepare for them the next journey of their spiritual eternal life.  Of course, you’re just a few years older than I am, so anh Doug is not the “elderly” yet, that title is belongs to our parents, but as anh Doug’ve said “have seen my own future”  and so do I. Even Jesus was shaken in the garden before his  death and prayed to our Father to take the bitter cup (of death) away, but still - he carried out the  Father’s will. Each time I read this, it gave me more strength and full of love.

Finally, there is this blessing – from my mother.  In the past few weeks, I have discovered she likes to “rough house.”  You know what I mean – the kind of things kids do when they’re bored.  They poke at each other, swatting away just to break the monotony.  From what I understand, as the mind dwindles, the soul likes physical touching.

And so this blessing – my mother in unreserved laughter as we rough house.

Thanx to the MGB for the photo.

Chow Time

My mother has an excellent appetite – so much so that I tease her about being hungry all the time.  However, I did wonder if her Alzheimer’s might inhibit her ability to feed herself.  During some of the darker times in the recent past, she couldn’t distinguish a knife from a fork.  Recently, I arrived at the nursing home at lunch time.  I stood behind her for awhile – she didn’t know I was there until I made my presence known.

I watched as the Certified Nursing Assistant served her lunch.  Mom scolded the aide for cutting her meat with a curt “I’ll cut it myself.”  And – sure enough, she did.  I have an idea this has happened before as the aide didn’t bat an eye, but I also noticed the aide cast a glance towards Mom as she cut her meat.

(As always, click on each photo to see a larger version.)

I think the bib is a fairly new thing – I had noticed food stains on her clothes before, and I assume the staff thought it was time for a bib.  She not only doesn’t resist the bib, but when it fell down off her shoulders, asked me to put it back on her.  She did a good job of  polishing off most of the Swiss steak (with mushroom gravy), scalloped potatoes, and spinach, then enjoyed her dessert of banana pudding. 

The dining room is a wholesome place.  Mom sits at the same table for every meal – not because the staff seats her there but because that’s where she is used to going.  She walks to every meal herself with only a reminder from a staff member.  There is some social interaction at the table with some of the other residents, but its not what most of us would call “stimulating conversation.”  The lady you see in the center of this picture if Mom’s roommate, though I doubt either know each other’s name.  The roommate is still very upset that there is somebody else in “her” house.

I visited at lunch time another time too.  It was hard to stifle a giggle listening to her long and loud complaint that she has “been here for hours.”  She just clucked away as if her time was being robbed by inefficient people who were causing her to be late for a meeting to decide the fate of the world.

But, the dear reader will also understand I didn’t have the courage to differ with her.  She is, after all, Mom.